An epileptic writing about epilepsy, the brain, and perception

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I’ve noted over my lifetime that after a long bout of a surge in epilepsy, as the brain settles down and its plasticity begins repairing and reconnecting things, that new memories well up, in scattered bits and small pieces of past times. They pop up in anecdotes, unconnected, details I’d forgotten or entire events, people I hadn’t thought of in years, memories of sensations long past. It’s always disconcerting but it’s fun too. When you lose long term memories you don’t really notice. They’re just not there anymore. If it happens a lot over your entire adult life it doesn’t bother you much at all. You don’t miss what you no longer know you had. It’s not like you suddenly can’t remember something. You don’t know you ever remembered it at all. It’s only when you’re around people talking old times and you have no clue what they’re talking about that it gets disconcerting. Otherwise you’d never notice at all. Memory loss is a lot more disturbing to those who do remember than to those who can’t.

Which is what makes these sudden refound memories so oddly disconcerting. Things that were no longer there are instantly there again, bits and pieces of your past existence so vivid, so real, in full color. You can hear the voices, feel the feelings. You can almost reach out and touch them. They’re all non-sequitors, of course, it’s not like you’ve recovered complete files on your hard drive. These are just almost randomly placed memories that have been reconnected by a newly repaired or rerouted neural connection. Memories are “stored” in different places all over the brain, and any neural rewiring is bound to uncover a few, though not in any organized or systematic patterns I’ve ever noticed. They’re just random remembrances, like finding a drawer full of old post cards and Polaroids. Just anecdotes. I’ll bring them up a couple at a time in conversation so they don’t throw anybody—if you suddenly begin remembering too much stuff at once people get weirded out (people are very easily weirded out), or they spring up in vividly detailed emails or Facebook posts or blog entries. If I write them down the memory hardens, if I merely talk about them they can blow away, though sometimes I’m not sure how much that I’m writing is what I actually remember and how much is me fleshing out the details to make the writing prettier. In the end it comes down to what makes a good story, I suppose, and none of you readers will know any better or care if the writing is good enough, and the refound memory hardens into the usual mortar of fact and fiction that binds human memory together anyway.

So I just spazzsplained a memory lapse to someone. It was a long windy paragraph and she listened, too polite to interrupt. I finished and there was a long second, then another, even longer, and then she asked if I meant that it was on the tip of her tongue? Um, yeah, I said, that’s what I meant. OK, she said, just wondering, and as she turned round I caught her rolling her eyes in the mirror.

Damn. I’m at that stage of brain rot where I really can’t figure out my bills anymore. I literally can no longer do it. I used to be a master of that stuff, had everything worked out a year in advance. Now it’s like handing a stack of papers to a chimpanzee. About the only thing I can do anymore is write. I do that really well. Apparently what’s left of my grey matter has adapted to drive me mad with hypergraphia, writing at five a.m. when I ought to be in bed. Not that mind that much. I get a lot of writing done that way. It’s weird, though, losing my sense of time. I know today, but before today and after today is pretty close to non-existent. I don’t have a week, I have trouble remembering the day of that week, I know the month only by the days we get paid. I just live blissfully day to day, each morning utterly new, devoid of the previous day and oblivious of the next.

This past Monday (I remember it was Monday, though that feels like yesterday, or maybe the day before, and actually, some of my devoted fans may recall, I thought it was Friday, i.e. today) I was noticing I was feeling stiff. Everything stiff. Like it needed loosening up. So I figured I’d run some items down the stairs the recycle bins. The night was just a tinge chilly, the breeze carried the scent of night blooming flowers, the moon bathed the deck and steps in a pasty light. It was gorgeous. I stood there a minute soaking it all in. Suddenly I realized I had not been outside the house in a week. Well, I had, a couple times, out on the deck for moments, maybe a minute or two in total. A minute or two in a whole week. I hadn’t noticed. I was busy the whole time, never bored. I was reading and writing and following the madness in Washington, I did chores and cooked and washed dishes. I had done laundry. I watched a whole mess of Alfred Hitchcock movies. But I had never left the house. A whole week had gone by and I didn’t even realize it.

A friend of mine has an epileptic cousin. You’re so different from him, she once told me. You have a day job and a writing gig and go all over the place and seem so in charge of your life. Which was true. It was a struggle, the epileptic damage was already afflicting me, but I hid it well, complained little and managed to keep very busy and productive. Not like her cousin, she said, who mostly stays in his room all day and never goes anywhere. The poor spastic bastard, I thought, thank god I’m not one of them. Most of us are, helpless and housebound and out of sight. Not me, though. Not back then. Funny how things just sneak up on you.

One of the more annoying things about having your executive functions rot away is how you keep forgetting how to do things you’ve done a zillion times. I’ve blogged thousands of times on WordPress by now, but I still forget how to do the most basic things on it. Simple little tasks that ordinarily took a few quick steps, just a couple seconds. Now I just stare at the screen, and if I get too stuck I start to get numb all over, then queasy, then realize the epilepsy is totally fucking with me, and soon I find myself writing about what I was trying to do it instead of actually doing it. Jesus Christ, a half century of this shit. You’d think I’d be used to it by now. I need a smartphone but dread getting one as I’ll be so bewildered by it, it’ll be this little screen that opens onto a multi-dimensional warren of a zillion options, each requiring the ability to remember a few simple steps. Sounds so easy. One man’s app is another man’s seizure.

You see it all around you
Good lovin’ gone bad
And usually it’s too late when you, realize what you had

Hold On Loosely–38 Special

I once spent an entire day in the Mojave desert with that song going through my head. I like neither it nor the band. But it hung there, after a chance hearing on the 138 somewhere past Pear Blossom. We were on the way to Barstow in a big pick up truck without a cd player. Radio in the upper desert was all classic hard rock and conjunto between crazy preachers. You see it all around you, the southerner sang, good lovin’ gone bad.

Hours later More Than A Feeling, heard somewhere on the 15 outside Barstow, supplanted it. You wouldn’t think you’d ever be glad to hear Boston, but that day I was. That big crunching riff. Her walking away, away, awaaaaaaaay. Every once in a while, like a distant AM station I’d hear a verse of Hold On Loosely again, but once back in the LA basin a whole string of left of the dial stations replaced it with jazz, punk rock and weird shit. 38 Special was gone.

Until today. I made the mistake of opening an email from Rockaway Records. It’s our local Silver Lake record store, just a microcosm of Hollywood’s vast Amoeba, a Whoville to Amoeba’s Forbidden Planet Krell machine immensity. I like it that way, small, easy to navigate, not so many record collectors and their socialization issues. Plus it’s harder to spend money. Even if they did just get seven thousand singles, not that I buy singles. There was a picture of a mess of them. Elvis. The Carpenters. Molly Hatchet. Southern hard rock. Not my genre. I couldn’t tell you a single song by Molly Hatchet. Perhaps that is why, due to a dearth of any associated stored memories, I heard

You see it all around you
Good lovin’ gone bad
And usually it’s too late when you, realize what you had

But that’s not Molly Hatchet you idiot, that’s 38 Special. Too late, it came round again

You see it all around you
Good lovin’ gone bad
And usually it’s too late when you, realize what you had

because it’s the only part of the song I knew and it is, face it, catchy. Catchy is DNA to an earworm, it latches onto it the way a virus latches onto yours, stealing it, using it for its own needs, which consist of nothing more than repeating itself over and over. And like a virus is so simple it’s hardly even alive, an earworm is so minimally musical it’s barely there at all, a fragment of music that once unleashed is somehow able to recall itself over and over and over in ways that nothing else can. We can’t recreate favorite moments like that, loop warm memories to have them replay over and over in our heads incessantly, not people’s voices, punch lines, orgasms, Eureka moments. Nope, only earworms seem to come up on their own, out of nowhere, fragments of songs we probably don’t even like:

You see it all around you
Good lovin’ gone bad
And usually it’s too late when you, realize what you had

Yup, a 38 special song I am hearing because my brain couldn’t think of a single Molly Hatchet song to go along with the Molly Hatchet 45 it saw in a picture in an email. My brain doesn’t go into Close To You seeing the Carpenters single, or Hound Dog for Elvis, nope it defaults to a southern rock song by the wrong southern rock band. And I don’t even like southern rock. Hell, I lived through the Free Bird era, and Marshall Tucker, and the live version of Green Grass and High Tides Forever, which along with Hot Blooded by Foreigner and Heart’s entire catalog drove me into the depths of punk rock. But then you know what they say:

You see it all around you
Good lovin’ gone bad
And usually it’s too late when you, realize what you had.

Awaiting our tax refund, I get a letter from the IRS. They are holding it until I file for not one but two years I never filed for. You’re joking I thought (as if the IRS ever joked.) Nope. I found the undone taxes. Looks like I had filed extensions, twice, and then forgotten, twice. Have done them since them, every year, early. Go figure.

I remember now, though, that I did miss a year before these two and then filed two years in one. Not sure how that happened but it happened. It had never happened before. Got a refund on both so there was no penalty. Looks like the following two years I flaked. No idea what the result will be. Not looking like a refund, though.

This is just another of those things that fell through a hole in the brain (actually I do have a hole in the brain, literally, hence all this). Alas, the world doesn’t work with holes in brains. It’s made up of whole brained people who don’t mess up, and people whose memories haven’t been erased clean in five minutes like a blackboard. We were always exceptionally good about taxes. Keeping great records, timely filing, being honest. But in 2006 I had a hellish year of small seizures that went on for months and months, unrelenting, and she had a blood infection in 2008 that stopped her heart and left her essentially dead for five minutes. After that everything changed. Some things instantly, like her amnesia and vaporized executive functions. Some things slowly, over the following decade, like my disintegrating memory and executive functions. Either way, you’d be amazed at how much you can forget. And how, once forgotten, it’s like it never happened at all, until the IRS send you a nasty letter, or someone bangs on the door with a summons for a bill you can’t remember. Or you find out they’re going to haul you into jail because you forgot to mail in your jury form. Or the internet disappears, unpaid for. I knew I forgot something, I always say. Though most of the time I didn’t know I forgot anything. That’s the beauty of amnesia.

I was just flipping through Seized, by Eve La Plante, probably the only real book ever done on Temporal Lobe Epilepsy. I actually have Frontal Lobe Epilepsy, that’s where the hole is, but most of the electrical storms caused by that hole sweep across the temporal lobe like a low pressure front on The Weather Channel, causing all sorts of weirdness and memory loss and zapping executive functions all to hell and reducing my time frame to a few days from now and not much more. Slowly the brain deteriorates, neurons burned out and destroyed. You’d be amazed what you lose with it, like remembering to file taxes. Anyway, in the section of the book called “Ordinary People” it discusses three people. The first was a guy who was messed up but still functioning, working, very busy, just a little odd. I remember how in 2006 that was me. The next subject was a lady who’d been successful in business, but epilepsy had messed her up. There was a paragraph in there about what a mess her finances had become, even on her executive salary, with money misplaced, bills unpaid, checks bouncing, utilities turned off, debt collectors calling, the IRS angry. She had a drawer full of unopened mail. She was an organizational disaster. She’d never been good at handling money even before her epilepsy, and look at her now. Damn, I thought, glad I ain’t her. I could not even imagine what it was like to be her. I was super organized, super disciplined. I was on top of things.

Well guess what. I ain’t that first guy at all anymore. Now I’m her. And unlike her I had been good at our finances. I remember a month long road trip we took across country in 2010. Not only was every single bill I worked out a cost estimation of the trip ahead of time. When we got back I went through all the receipts and bank statements and realized I had been off only a couple hundred dollars, and that was because the price of gas had fallen while we were driving ten thousand miles. Everything else–lodging, food, etc.–was remarkably close to what I had figured. And this was a trip that we sort of winged the route on. No hard and fast plans. Somehow, I had worked that all into my calculations. I couldn’t even do that for a day trip now.

(I’m afraid to read about that the third person. I remember it was weird. Very weird. She played the violin in the symphony and would go on these weird and disturbing adult oriented Through the Looking Glass adventures. It was a rare case. By the way, Lewis Carroll was epileptic. Never Never Land is where he’d go in his seizures.)

Nice to know, however, that screwing up one’s taxes by forgetting them is just another symptom. You go to your neurologist, tell him your sad story, and it’s just the tenth similar story he’s heard that day. But it’s jarring to think of us ten years ago, though, and us now. I can actually think back if it’s longer term. (Long term memory is less affected than more recent memory, and short term is the most ephemeral of all, ask any pot smoker.) Between my wife dying for five minutes and having her memory obliterated and my brain being fried to hell by who knows how many little seizures, we’re like ten year olds trying to play grown ups with the bills. What a disaster this is. What a decade this has been. I wonder what this next decade will bring. If I could see more than a week into it I’d probably be concerned.

I used to be good at so many things, and all I can do now is write. So I wrote this.

Fifteen years ago, I worked for about thirty or so people, from executives on down, and I handled all their expense reports and purchases and you name it. I was so good at it that I was one of the employees that others would come to when they were stumped trying to figure out how to expense something. Executives from outside my department would come and ask for help. That was at Disney and I knew my shit. I was also, for a year or two, the one man purchasing department for Disney Online, when it was a start up. Millions of dollars of purchases went through me, I drew up the purchase orders, I figured out to set up the accounting for each, I got them approved. I remember setting up a database on Access to keep track of them. A schedule on Project. I had that purchasing down, too. Later, I was told by accounting that I processed more accounts payable invoices than the rest of the Walt Disney Internet Group put together. Tens of millions of dollars every couple months. That is in addition to all those expense reports and getting purchase orders processed–though I was no longer the purchasing department. There were several people by then doing what I had once done. I was a master of details and process and numbers.

This occurred to me a couple nights ago as I stared at our bank account and tried to figure out if we had enough cash on hand to cover rent. (We did.) I couldn’t remember what charges were outstanding. I couldn’t remember what we had paid or not. I had definitely forgotten to pay the DWP, I knew that, as they were threatening to shut us off. Time Warner Cable too. All these numbers swimming, these things I have no ability to calculate or schedule or understand. An infinitesimal fraction of what I was once a master of at Disney. It’s all beyond me now.

Losing your executive functions is a bitch. Abilities just disappear. Things everyone can do I can no longer do. Basic human being things. Those neurons burned away a long time ago. My temporal lobe, where all these things lie, is a beat up mess. A life time of small seizures, thousands of them, have done their damage. It’s like someone reached into the hard drive of the computer I’m writing on and 0-949uj1/’p23fh13wcde’p9dcalkjaZXA. Just like that.

A couple days ago was our wedding anniversary. The day before I was looking up at the digital sign above the bus driver, charmed, and it said November 28. November 28? Oh wow, November 29th is our anniversary. I said that aloud. She said yes it is and smiled. I said I had completely forgotten. I had never forgotten before. Not even almost forgotten. I always remembered. She smiled again. That’s OK, she said, we’ll have a nice dinner. You live with a husband long enough and you can see that his brain has been zapped away, and that he forgets things, but he means well.

I had never forgotten our anniversary before. I wondered what else I was forgetting. What else I would forget. And I sat there, as the bus lurched along, with the cold hollow suspicion that I was not going to able to take care of us by myself much longer.

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